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Anyone have pain with urination?

Tue Oct 16, 2018 2:35 pm by mertzwl

Hi everyone - I can't believe I've been dealing with this for almost 10 years and an appointment scheduler at a urogyn office is the one to suggest I look into vulvodynia. Honestly, I don't care, I just thankful I might have an answer.

I have pain in one specific spot right around the urethral opening so it always coincides with urinating (it's not a uti). Does anyone else deal with pain …

Comments: 6

Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

Comments: 4

From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

Comments: 4

Had this for 5 years, looking for people who understand

Sat Oct 06, 2018 9:46 pm by blackberrie

Hey all. I'm really struggling to find anyone in real life who can really understand what I'm going through. I've had vestibulodynia for 5 years now and I'm single. Obviously it has completely affected how I approach dating and sex and the fact that I can't really talk to people irl about it has made me feel very lonely. I've found that a lot of the women who have this problem are married and …

Comments: 2

6 year sufferer but I’ve found some hope

Wed Oct 10, 2018 1:33 am by Npage14

Hey, ladies! I’m new to this support group, I’ve thought about doing something like this for a while so I wanted to try this out! I’ve had vulvodynia for 6 years now, I am self diagnosed. I’m 20 now and the pain started when I had my first encounter with sexual contact when I was 14(I still remained a virgin though it was fingering). For a couple years the pain was so bad I could hardly …

Comments: 0

Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

Comments: 5

Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

Comments: 1

Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 3

I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

Comments: 6


Hi, I'm new (from the UK)

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Hi, I'm new (from the UK)

Post  Dina on Fri Jun 17, 2011 7:06 pm

Hi everybody!

Great to see that there is a support forum for this! I'm pretty sure that I have vulvodynia, but still waiting for my GP to bother giving me a diagnosis. This all started after I had my first child back in 2007. Very soon after I noticed a horrible burning/stinging feeling upon penetration and it was the same every time. After over a year I went to see my GP who said I probably had a nerve problem where my stiches had been. He gave me gabapentin and referred me to the gyno at the hospital. The gabapentin started working straight away and I was soon painfree, and by the time I finally got my appointment at the hospital there was no pain for them to assess.
I stopped taking gabapentin a few months before I got pregnant again and never felt the pain again. But then a few weeks after I had my second child I noticed strong discomfort on touch, particulary in the area around my clitoris or urethra (if I can manage to climax I don't get a wave of pleasure, I get a sharp, deep shooting pain all the way down my thighs). It was only upon contact at first and I didn't really feel up for sex anyway because of my baby blues, but then suddenly it got much worse. I started getting so much pain that it was sometimes difficult to walk, or sit and my trousers were getting to tight to wear. I also had periods of little or no pain unless there is direct contact. I already have an existing issue with my bladder (long story short, my GP messed up my meds for a UTI and I ended up with an overly sensitiv bladder so I constantly feel full and have to use the toilet at least 20 times a day) so my first thought was that this was something relating to that. I get UTIs at least 4 times a year so I went to my GP and got some antibiotics but it didn't improve.

So after 4 appointments with my GP I've now had another appointment with gyno but the seriously stressed gyno I saw didn't have time to listen and thought that all my problems (I also had a seriously heavy and irregular period) would be solved by removing my copper coil. Well, the coil has been out for well over a week and I still feel this constant throbbing pain.
I have an appointment with my GP on Wednesday and could really do with some help in regards to how I can get a diagnosis. My GP doesn't seem familiar with this (the GP that gave me the gabapentin left the clinic so I can no longer see him).

Dina

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Re: Hi, I'm new (from the UK)

Post  noni on Fri Jun 17, 2011 9:07 pm

Get a refferal to a VULVAR CLINIC or PELVIC PAIN SPECIALIST.

or to a PAIN CLINIC.

Goodluck !!! Smile
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Re: Hi, I'm new (from the UK)

Post  Aussie on Sat Jun 18, 2011 12:04 pm

hi there,

it sounds like you have been suffering with ic for a while now. look into the diet. It may help with frequency also have ic. As for vulvodynia, a women's health physio is better than any one to assess tension in pelvic floor which will be contributing to pain. Gynos i found have been les experienced with these issues. Will write more on monday , too hard on my phone.

Claire x


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Re: Hi, I'm new (from the UK)

Post  Sarah001 on Sat Jun 18, 2011 12:52 pm

Hi and welcome. Aussie is right a Women's Health Physio is where you need to be to have the pelvic floor checked out, only being hooked up to a machine with a vaginal sensor in place will give you precise readings and information about what needs doing. V can be caused by tight muscles, weak muscles or tight and weak muscles so it can vary from woman to woman. Strangely I have a friend with burning mouth syndrome and she was also told the coil she had in place could be behind that, I don't know how exactly but it was something she recently discussed with me.
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Re: Hi, I'm new (from the UK)

Post  Dina on Sat Jun 18, 2011 6:07 pm

Do they have these clinics in the UK? I have been referred to physio at the hospital before do learn pelvic floor exercises for my bladder, but that was years ago though.

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Re: Hi, I'm new (from the UK)

Post  Aussie on Mon Jun 20, 2011 3:18 am

They will have clinics in the UK for sure. Ask Sarah on that one, but any women’s health physio should be able to give you some guidance, it is just finding the right one that is willing to work with you, getting those trigger points to settle and stay settled down.

Have you tried the IC diet? www.icnetwork.com

Some times 'kegles" prescribed to help frequency can make the condition worse and in some cases better, so an assessment by a competant physio is essential, you don't want to do the exercises wrong.

If you gp can't give you a diagnosis - of 'vulva pain' (vulvodynia) - excellent diagnosis doc Smile - then change gp's. I had to go to 4 gp's then 2 gynos to get my 'you have vulva pain' diagnosis. Bloody idiots, not that it really matters, we already know what we have.

Anything else I can help with give me a shout, always happy to give advice. We are all in this together.

Claire


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Re: Hi, I'm new (from the UK)

Post  Sarah001 on Mon Jun 20, 2011 11:28 am

There are vulval clinics but they tend to have a huge waiting list, there's a list in the info section I think but it is exactly as Claire said you need a Women's Health Physio. WH Physios are available on the NHS if you can find one in your area but again have a waiting list because there aren't many but there are private ones who charge the same as normal physios. Mine was private and she charged £32 a session. They can test your pelvic floor to see how tight it is, whether you can relax it etc and give you a program to suit your own needs.
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Re: Hi, I'm new (from the UK)

Post  Sebby (Admin) on Mon Jun 20, 2011 6:03 pm


Welcome to the forum..yes there are Vulval clinics...see forum link below

http://www.vulvodyniasupportforum.com/t230-list-of-uk-vulval-clinics

Ask to be refered to the one nearest you


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Re: Hi, I'm new (from the UK)

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